Endometriosis Stories - Page 36

Brandi Hrycyk United StatesOct 2010

Hello, well now I'm soon to be 38 yrs old. I never thought I would be writing such a letter. It started when I turned 17yrs. old. The symptoms were bad at times but it wasn't going to keep me in on a Friday night. As a few years passed bye, I knew something else was wrong. At 19yrs. old I had my first endoscopy surgery. It was a lot harder then I thought it would ever be. I was told that having kids would be a slim chance. That was the one thing in life I never wanted to hear. I'm the oldest of 5 kids. I always thought I would have many little ones running around my legs in a room full of toys. God had other plans for me.

But at that time in life and also that young, I didn't understand what was planned for me. My thought was that I would be like my mother. Who was able to become pregnant as easy as saying hello (not really but you understand what I mean). For my mother's oldest it was not so easy for me. At this time in life I found the man I was going to marry. Life for us both was hard. I had 4 surgeries to remove Endometriosis. which the Doctor told me every time, Brandi I think I got it all, I did my best. Going home in pain and hopeful for what might come next. Well, lets say it never did. Not on my own that is. After 5yrs of trying to have a baby with a Endocrinologist, IVF was are only step. We heard those words your (lets say) eggs are doing great. We can remove 10 next week.

Now at the age of 26yrs old I knew that my day would come. The day for the transfer 6 eggs were removed. We waited 3 days for the call from our doctor saying your dish is pregnant. My hubby and I laugh and ask when are our babies being but back in me. The years and the pain and all the lost we had to deal with. We saw my doctor a week later to put the 3 eggs inside me. I was to scared I wanted to walk on my hands (hand stand) for the next week. When our blood test came back it was now a sure thing we were having a baby or babies. Life as we have know it was going to change and fast. We had triplets and lost one at 9 weeks. Our twins today are doing well. Madalyn and Patrick now 10yrs old. are doing well for being 7 weeks early. I was told I don't think that your Endometriosis will come back now. But it did.

When my twins were 1 1/2 I had a full hysterectomy 3 days after my 30th birthday. I did all the reading I could get my hands on, but it never set my heart on how I would feel after the surgery. When the words are you can not have kids, from maybe you might not be able to have kids. For a woman, that was over whelming for me. Now hitting 38yrs old, with no female organs and have Endometriosis and bladder problems (PLEASE ALWAYS HAVE YOUR DOCTOR CHECK YOUR BLADDER BEFORE A HYSTERECTOMY). The answer will change your life.

JenniferUnited StatesOct 2010

Hey everyone. well, after reading all of your stories, I consider, in a big way, myself to be very lucky. I have never had a hard time getting pregnant, as I have 5 small children and my endometriosis is severe. So, I believe that there may be hope for those of you that are unable to conceive at this moment. I was misdiagnosed 11 years ago with cervical cancer. My endometriosis had gone untreated for 11 years. I knew something had been wrong because of all the cramps and constant pain. Not to mention, all of my pregnancies were problematic.

I had recently undergone a laparoscopy and they lasered out what they could at this surgery. My doctor now wants to do a full hysterectomy. I don't want to undergo all of that pain, as my children r all under the age 8. (1,2,3,4 & 8) that kind of surgery is impossible at this time in my life. I just turned 28 yesterday. I am so confused. I went in one day thinking I was fine to only find out I had severe endometriosis can anyone relate to me?

I need someone to talk to because my hubby doesn't want to hear about it any more, but its all I can think about. I'm terrified that they want to take the part of me that makes me feel like a woman. I'm terrified that I wont be able to be a mother for a long period of time. just so many thoughts that circulate. thanks, Jen

Lori LeybaUnited StatesOct 2010

Since I was a teen I've experienced painful menstruation. I started my period when I was 11. I went to the doctor for it at age 15 and was given a prescription for a mild narcotic. Now I'm 52 years old and was just diagnosed with endometriosis 4 weeks ago tomorrow. I had classic symptoms. I even developed Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, an irritable bladder, adult allergies, adult asthma, and more.

I come from a family with autoimmune issues. I had three of the best docs in my large city over the past 20 years and my complaints about pain weren't dismissed, but were definitely misinterpreted. I believe that they were often misinterpreted because I had not experienced infertility.

I had my three children when I was very young and had no problems getting pregnant. My younger sister also has severe endometriosis and is childless. That should have been a big clue. About 6 months ago, at a routine GYN visit, my new doctor suggested that I have an ultrasound. She didn't expect to find anything, but she wanted to cover her bases.

There was a medium sized complex cyst on my right ovary (just 3 cm), but my uterus was normal. She suggested that we do another ultrasound in a couple of months. In the mean time I was having right sided hip pain that I had grown sick of. I had an MRI of the hip and they also saw the cyst. It had grown to 4.5 cm. My second ultrasound a few weeks later said it was fairly stable but smaller at 3.5 cm. A third described it as septated and still about the same size, however a smaller cyst on my left ovary had grown a bit and had a new sister cyst (both presumed follicular).

During those months I was even more fatigued than usual for the week before and during my period. My pain reached a new height during an 11 day road trip. By the end I couldn't even drive the car. I finally consulted to have a laparoscopy to remove the larger cyst and figure out what was going on in my pelvis, and a CA-125 was run (it was negative).

When I came out of surgery, my doctor, who is not a particularly empathetic person, said, "You must be a very brave lady." I was anxious to hear her report, but then disappointed with hearing it. She was unable to remove the cysts, which were all endometriomas, due to the extensive endometriosis that was found behind my uterus. She was encouraged when she entered the abdomen because everything looked great until she looked behind the uterus. My ovaries and tubes are adhered to the posterior side with complex adhesions. She couldn't lift the ovary out of them to do the removal. Her only option was to stop the procedure or to switch to a laparotomy and she felt the risk was too great because she believed it would have taken hours to sort it all out.

Her recommendation for me is a complete hysterectomy. I don't agree with her, but I will hear her out tomorrow at my post-op appointment. In the mean time I started on natural progesterone daily to try to oppose my estrogen (which is already so low that I'm near menopause estrogen levels). I have more questions than answers and am considering getting a second opinion from Dr. David Redwine in Bend, Oregon. I'd like to see the diseased tissue removed, the adhesions removed, and the right ovary (if not both) preserved. I'd like to keep my uterus as I believe it's the key to pelvic support for my future.

Jerri BlanchardUnited StatesOct 2010

About 3 years ago I started having asthma symptoms and new allergies. I am 35 and have never had anything. I started bleeding irregular one day and it prompted a OB visit. I had a exp. laparoscopy to find endometriosis. I was offered Lupron which after my own personal investigation I proudly declined. I did show some scar tissue in my lower back from the endometriosis and pooled blood on my cervix.

I tried the endometriosis diet, did loose weight and it did help the endometriosis some, just really started dealing with it. Problem is when you start wheezing from the asthma/allergies you need prednisone and other high powered steroids that will send the endometriosis into a whirlwind. Anyway, this last time I got sick my breathing got real bad and I had a MD mention pleural endometriosis that's when the cells float up and attach to the lung or bronchioles - I had a lung CT that came back clear and I was so happy because that had me a crazy person.

I refuse to keep on living and wondering if that will ever happen or will it strangulate my bowel one day leaving me with a colostomy all because of endometriosis adhesions. I have decided to have the robot assisted hysterectomy and just let it go. I have two great little boys and I just can't keep worrying about this any more. I hope if I rid myself of this that I will loose some of the asthma symptoms or at least when I seek tx for that I won't end up with huge cysts to deal with as well. Just venting, saying my peace and good riddens to the endometriosis. I see my MD tomorrow and we have talked about the sx, so now I will let him know I am ready.

Kimberly Cook United StatesOct 2010

For as long as I can remember, I have been suffering with abdominal aches and lower back problems. I started my cycle at 10 years of age and remember bending over with pain during my cycle. I have been to 7 different doctors. They have had all their own personal opinions such as: IBS, kidney issues, bladder issues, kidney stones, and all other types of problems/issues besides endometriosis!

I explained to EVERY doctor that something was wrong, but no one actually believed me because they would do ultra sounds, sonograms, and pap smears but would not find anything! As the time developed, I started taking medication.

Every single year, my symptoms would get worse! It started interrupting my lifestyle, my marriage (divorced now), my getting out of bed, my self esteem, just everything you could imagine. My mom went to a doctor and suggested I should go see her. I was excited because I thought doctor number 6 would be the end! I visited her office, she examined me and took the same test I had previously taken before. (ultra sound etc). I went through all types of questioning from her and her making fun of me because I was on a lot of medication.

She says she did not understand why I was always in agony and why I was on so much type of medications. She suggested but was reluctant to do a laparoscopy surgery. Finally when she did the surgery, she apologized to my family and stated she was so sorry for not believing me! What she found was I had stage four endometriosis, polycystic ovarian syndrome, cyst, polyps, and fibroids!!!!!

Immediately after the surgery, I had a myomectomy three weeks later. She went in cleaned me out (so I thought) and for 6 months I was great!!!!! After surgery I felt wonderful for 6 months, then the agony started again!! I am slumped over all the time, I can't move from my bed, I bleed ALL THE TIME!! I have not been sexually active in about 4 months due to me bleeding all the time. I bleed blood clots, huge blood clots, they come out everywhere; toilet, shower.

My self esteem has totally decreased, I feel depressed all the time and I cry so many nights wishing for answers. I am a strong believer in God and know that all things are possible for those who believe!! I am on my 7th doctor and he is located in another city. I am believing that because he specializes in endometriosis, fibroids, and infertility.

I would like to speak to all the women that are going through a similar situation, hold your head up, I know it is hard. I know sometimes you want to give up and stop looking for solutions to fix the problem. Learn how to talk to other women, learn what others are going through, it helps out tremendously!! This website is the best, I thank God for whom ever thought of this website, it is truly a blessing. I would like to help other women that are not to confident in sharing there stories.

Paula BarathyUnited KingdomOct 2010

I firstly have always suffered from heavy periods but about 8 months ago I started to experience more cramps so I could not get out of bed and controlling the pain the best I could with very strong medication and menafamic acid to control the bleeding. An ultra scan showed no abnormalities but the cramps increased.

I finally had a Laparoscopy and Hysteroscopy and Endometriosis was found around my left ovary and the surrounding area. That was two months ago. I have been experiencing very low moods the last few weeks but have returned to work to try and get some abnormality back into my life. I refused to have a Mirena Coil fitted because I have had problems in the past relating to a coil and had to have it removed. My second period since my operation was less painful and for once I did not have to take strong painkillers. I am hoping each month will improve.

I am so pleased I have found this site as to gather information about diet and supplements. I know there is a high risk factor that it will return but I will remain positive for now.

Lacy Whitehead Oct 2010

I am like many of you woman on here, trying to figure out why I have endometriosis. I am 24 years old and have 3 children. I was always told that I would never be able to have children, their is hope for all of you out their.

I am looking for other woman to talk when we are having bad days and good days. This is a disease that we can not help. We did nothing to get this and all we can do is learn to live with it. I have seen so many doctors and take so many pain meds. I do understand that I am addicted to pain medication but it is the only way that I can go on with my life. I am in and out of the hospital all of the time because I get so sick and puke everywhere and get dehydrated and then I spend the next 4 days trying to have the doctors hydrate me back.

Sara Ireland Nov 2010

Hi all, my story began 6 months before I got married. Simply i noticed some mid cycle bleeding and a pain in my right side when i ran. this gradually got worse and I found myself passing a very large blood clot on my honeymoon. After seeing my doc she told me i had an ovarian cyst and referred my to a gynaecologist.

I had a laparoscopy which found that I had a small patch of endometriosis and a dermoid cyst 5cm which would have burst 6 months down the line and i would have lost my ovary. so all was cured..... or so I thought. 8 months after my operation and 8 unsuccessful months of trying for a baby I have the bleeding and even worse pain again.

I have been told I have another cyst and have to have another laparoscopy regarding the endometriosis and a dye test regarding fertility. I work in a nursing home and cannot lift as it really hurts so I am off until I get my laparoscopy, state sick pay doesn’t stretch very far. So I am bored in the house, living off tramadol for the cramps but it doesn't work as well any more!

The symptoms are getting dramatically worse and I am being sick quite a lot ( could be traadol related tho) does anyone have any advice? I'm thinking of going to casualty next time its really bad in the hope they will just do the lap then and there? sara

AliciaUnited StatesNov 2010

My Endometriosis story is like most of you on here, I am 28 and married I have been officially diagnosed with endometriosis since 2009. I suspect I have had endometriosis when I started getting migraines in middle school. I had not started my period but my change in hormones brought on migraines very badly for a few years between the time I was 10-13 years old.

I got my period very late I was almost 18 at the time and from that moment on I have always been in extreme distress with the symptoms. I had companied to my gynaecologist about the agonies I was suffering in 2005 when I was 23, she stated nonchalantly that there is only one way to find out what the pain was by doing surgery but she basically blew me off.

I then moved to Dallas in 2006 and decided to get on the three month birth control pill called Seasonique from the patch Ortho Evra which by the way works great for me and has for 6 years. I approached my new gynaecologist in Texas and explained the symptoms I had which I thought were to be PMDD and he decided to put me on YAZ a low hormone birth control specifically for PMDD. I cannot stress this enough do NOT take Yaz ever if you have endometriosis or any low hormone birth control pills, I became a complete wreck without enough estrogen, crying all the time, suicidal, mood swings, wouldn't get out of bed for days I would work come home, go to bed, it made me horribly depressed and I hated myself and the world.

I looked up YAZ online and realized my story was like a lot of other women out there and I got off that pill right away. I then met a new friend here in Texas names Jennifer through a mutual friend, her and I swapped stories and she explained her diagnosis was Endometriosis. Jennifers story of symptoms was extremely similar to mine, and what I was not told in 2005 is that if you do not treat endometriosis it advances and gets worse.

My symptoms of endometriosis are as follows; I have a period that only lasts about 4 days max, heavy bleeding only on the first day and the first day is like hell!! my pain radiates through my abdomen out towards my lower back, my lower back feels like a 50 lb weight has been put right in there and then kicked a few times like extreme bruising, my legs ache very badly like they are bruised.

I was so tired no matter how much sleep I got I would be sitting at my desk on the verge of tears due to my exhaustion, very sensitive I have mood swings from the change in hormones where I just want to fight about everything and then I just wanted to cry, my abdomen swells to an enormous size, and my cramps double me over and I am in the foetal position in bed.

The only medication that even touches my pain and sometimes it's only for only an hour or two, is Advil Gelcaps. In 2007 to 2008 I had stopped taking any birth control and my pain began to get worse, and I was scared to go on any more pills since the last one made me so crazy. I then knew just by talking to my girlfriends they did not have symptoms anywhere near like mine, and talking to someone with endometriosis I knew I had it.

I changed gynaecologists from the one who put me on YAZ, and saw a new gyno(I made it a rule to only see specialists and only doctors who knew about endometriosis and or were endometriosis surgeons). I talked to the doctor and basically forced him to do the laparoscopy for a diagnosis.

In Nov of 2009 I had my laparoscopic surgery and guess what they found I had adhesions on the front and back of my uterus, implants on my bladder and right ovary. When I woke up all I could do was cry because I knew it and now the scary truth was a reality. Right now I am on the ortho-evra patch to keep the endometriosis from advancing. My husband and I are going to go off the birth control early next year to try and get pregnant.

My pain is 50% better than it used to be my back pain is minimal, and I have used Arnica gel on my abdomen and back when it gets bad that has helped a lot. My cramps can get pretty brutal still. My emotional symptoms have greatly improved I am still weepy and sensitive but I am not as irritable, or angry as I used to be, and I am blessed to have a really supportive husband who understands the hormonal changes are not something I can help.

I have also paid more attention to my diet and trying not to eat too much of anything that is on the bad list on the endometriosis diet. I also take a daily supplement of Selenium. I basically run my health, now I do all my research and I run endometriosis, endometriosis doesn't run me.

I want to say this to everyone out there who thinks they have endometriosis, listen to your gut and talk to other women if your pain is not comparable and that tiny voice in your head says there's something wrong there probably is.